Why Feeling is Healing: Meet the Founder of Love Not Lost, Ashely Jones

Love Not Lost is an organization that provides professional photography for people facing a terminal diagnosis. To capture and preserve their memory for the people they love and who love them. Love Not Lost believes everyone deserves to be remembered. 

Today I got to speak with Ashely Jones and it’s kind of a heavy topic. We’re talking about grief today. What her nonprofit does is really unique and really essential. I’m excited to dig deep into this topic that most people shy away from.

So Ashley, tell us about you and your organization.

I love what you said about it’s something that most people shy away from. You’re not alone in that. So many people react the same way. So for anyone who’s reading this, you are a brave person and I’m glad you’re here. I think it’s something we don’t have to be afraid of, but because it’s rarely talked about, it is an unknown and that brings fear. The thing about grief is it doesn’t always have to be depressing. That’s sort of a myth I want to bust, grief can be healing too. 

Which leads into my story. I lost my daughter to a terminal illness at 21 months old. She was diagnosed at 2 months old, so we had 19 months with her, knowing our time was limited. And it was devastating. It was every parent’s worst nightmare. Knowing our daughter was dying and there was nothing we could do about it was such a hopeless feeling. My husband and I were very intentional about using that time together and that it was a beautiful time, not a depressing time. One of our friends gifted us a professional portrait session that was really beautiful. And most people think of these photographs as priceless in a death, because it represents something you can never go back to, but they are also priceless because of their power to help us grieve and heal. 

Skyler died when I was 27, and I was completely lost. I had never learned how to grieve. I didn’t know what to do with what I was feeling or how to heal. I discovered that photos were a really helpful tool in that process. I could hold them when she wasn’t there to hold. I could ugly cry without fear of judgement. These photos were freedom to grieve. 

Feeling is healing

I just wanted to give that gift to other people. I’d been involved in photography for a while and I started gifting professional photography sessions to anyone I heard of facing a terminal diagnosis. I knew I never wanted to charge these families a penny for these sessions, because I knew how financially stressful it was to face a terminal illness. But we still had our own bills to pay, which led me to starting my nonprofit. I knew if I was willing to give it all away I could find other people with the ability to help me give it all away. And so far we’ve been able to find really incredible donors. 

Our main program is free portrait sessions and free photos albums to people facing a terminal diagnosis. Since our launch in 2016 we’ve also expanded to providing support tools. We saw the need for helping people know what to say and what to do to help someone who is grieving. We have an online tool called howcaniloveyoubetter.com that is an email form. Instead of just saying “let me know if I can do anything to help”, which puts the onus on the griever to ask for help in the moment. It lets them actually take time to think about what they need. We’re campaigning right now to make that a more in-depth grief support app. And we have a Corporate Care program to bring grief and empathy training to the workplace launching online later this year.

We said earlier that this is a heavy topic, but I’d love to know. What is your favorite thing about your role? As someone on the outside it seems incredibly hard, so I’d love to know your favorite part.

It is hard. It is.

And I think society has done us a severe injustice. It has taught us that pain is bad. And that is something I really hope to challenge people on.

Pain is uncomfortable, but it is also an amazing opportunity for growth and healing. When I first started, it was more about the impact these photos could have on these families. I just wanted to help people heal, because photos were such a gift to me. And that’s what made me keep showing up for these people. 

And each family and each situation is different. It’s walking into the unknown and I never know what it’s going to bring up for me. My favorite thing is when families come back to tell us how much the photos mean to them and how it helped them begin healing. And when a family donates $1000 to pay it forward so other families can have that same gift of healing. 

I’d say the hard part is also taking care of myself, moment to moment. Because that’s important too, in order for me to continue to get up and do it all again. 

What’s been your favorite social post or movement you experienced online? Something you saw and that you really connected with?

Obviously The Ice Bucket Challenge was so fun and so easy to do. I saw a lot of other organizations try to replicate that viral energy and I think the challenge is to innovate and not copy. So that’s something we’ve been sitting with. And we, as an organization, want to be really intentional about how we engage people on social media. So we’ve been sitting with questions like “how do we encourage conversation, encourage healing, encourage people to be present?”

One thing we’re doing later this year is “DIY Dinner Parties”. So having meal kits and having people host dinner parties, with people they feel safe with, to encourage deeper conversation and connections.

Give us a Pro-Tip. What’s one thing that makes your job easier, your goals easy to achieve? It could be technology, it could be a ritual, anything.

So I would say finding systems that work for you. I am terrible with note taking. My husband will tell you, there are scraps of paper with notes written on them all over my office. But to me it’s all very organized! I know exactly where that yellow piece of paper is when I need it. And cataloging things in my phone right away is another way I am able to stay on top of everything and Google Drive. We’re also setting up with Hubspot this month, so I’m excited for my and my team’s ability to automate some things moving forward without losing quality of relationship with others.

Another tip I heard was from David Allen and it was “if it takes less than 2 minutes to do, do it right away.” That’s been a great thing to implement for me as well.

Finish this sentence for me, “More nonprofits should be…?”

Innovative.

I’d seen so many nonprofit websites that look like they’re from the 80s, that have outdated software, and poor designs. And we’re trying to solve the world’s problems! We’re doing the hard work to make this world better. It makes me sad when I see nonprofits not invest where it makes a difference to their donors. You don’t have to spend a ton of money, but you do need to spend some.

Yeah, the donors are looking at that stuff. It used to be just your website, but now your socials matter. If you haven’t posted in a year, people are left wondering if you’re even still operating. Marketing and branding may not be where they want to invest, they want to invest in programing, but donors make decisions based on the branding and marketing, so that needs to be a priority. 

Just because this is how nonprofits have always done things doesn’t mean this is how things have to stay. Our DIY Dinner kit, for example, is essentially a deconstructed gala. We don’t have to market or fundraise the same way other nonprofits do. We need to innovate. 

Exactly! Yes. So tell us what next for Love Not Lost, how people can get involved and stay up to date with your organization. 

We realized with Covid that there are so many people out of state who want to be involved. So one thing we’re doing is a virtual wine tasting event in October. People will have bottles of wine and a charcuterie board mailed to their house, so I’m super excited about that. We have a Remembrance Walk that we have every year on November 19th. All of these will be listed on our Events page on our website, LoveNotLost.org. You can sign up for our newsletter, and if you want to become a monthly donor or volunteer or serve as a photographer, all of that can be done through our website.  And you can find us on social media @LoveNotLostOrg. 

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